Archive for CAH

03 Dec 2015

Dreaming About Tomorrow

No Comments CAH, Everyday, Holidays, Personal, Uncategorized

Today began like any other day. Just any ordinary day. It can change in an instant. But I’m already dreaming about tomorrow.
  

It’s 10pm. I watch her sleep. I watch every move she makes. Is she ok? Is she too hot? When did she have her last does of meds? Did she keep it down? Should we go? Who will stay? 
My mind races at 100 mph and can’t stop thinking. It doesn’t. Not when it’s the well being of your child. 
This is our normal when anyone with CAH gets sick in our home. We have a window and at the 5 hour mark, if we can’t handle it at home, we go. We take no chances. It’s 3am and we haven’t slept all night. 
She will be fine. She’s starting to understand. She was ok with going to the hospital. I stay strong. She braves up. And so do I. We are in this together. 
Dad and I divide and conquer. One stays with the kids. The other goes. I usually go. We are in this together too. When we get to the hospital, it’s go time. Know your shit and get ready to speak to those that are trained to help. I’m only trained to help my little ones, but I’ve studied my heart out to know what I’m talking about. All for them. 

  
So here she sleeps. It’s safe to sleep here. They will take care of her here. She gets up…we watch movies. The 5am choice is Annie. Appropriate. 

  

Today began like any other day. Just any ordinary day. It can change in an instant. And lucky for us, the sun will come out tomorrow and it will be a bright new day for us to be thankful that we have another day. We will stick out our chins and grin because we know that this was just a gray day. But right now, I’m dreaming about tomorrow. Hoping for more days like this… Maybe tomorrow, right?! 

  

06 Oct 2015

A Vision of Hope: The CARES Foundation Gala and Why You Should Go

No Comments CAH, Kids, Lifestyle, Uncategorized

I’m actually living my dream. Right now. I’m in a state of euphoria that seems somewhat surreal because all my wishes came true and are happening before my eyes. The ones I prayed and prayed and prayed for that I wished so hard on every star and promised God the world if he would make them come true.

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I get to see my son play baseball. I get to watch my daughters in a recital. My children excel in school. They are kind. They are happy. They aren’t sick. I get to put my children to bed each night in their own bed. They are healthy happy and living a normal life. THIS is the life I dreamed of that I wasn’t sure would be a reality.

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It was 10 years ago that I lost hope… For that perfect little life I had always wanted. Could it be taped back together from the shreds that I had ripped it into upon learning about our newborns rare lifelong medical conditions? I didn’t know… My hope dwindled.

I remember that day like it was yesterday…4 days after Jake was born. The call that came as soon as we walked in the door. The doctor saying he would never grow out if this. Tears streaming down my face because I couldn’t even pronounce what he had.

All I wanted was someone to tell me it would be ok.

I wanted a crystal ball to tell me his future.

I wanted someone to PROMISE me he would be ok… FOREVER.

I needed a doctor to tell me they made a mistake.

I wanted someone to tell me he’d grow out of this.

I was broken. Afraid. Mad. Terrified.

Many of you, my friends, gave me back my hope. You helped me along the way and still continue to support my family in so many ways. The words thank you seem like an understatement.

And then…I found them. On the internet, at 3am. As I was desperately seeking hope and guidance. I found them. The CARES Foundation. They were a saving grace that helped me through the first, second and third pregnancies when I needed their guidance, advice and friendship. They guided me to doctors, people and gave me hope too. The hope which I have now am able to give to others because I know it exists.

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My payback is simple. Do what they did for me for someone else. Be the vision of hope for someone going through what I know they are going through because I have been there. I have walked in the shoes they now wear and understand what they need. I can’t change the diagnosis on the chart for anyone, but I can help them.

I can tell others that soon it will be ok.

I don’t have a crystal ball, but I know what the past 10 years looks like for us and can give them a glimpse into what theirs might look like.

I can promise that I will be their friend and that I’m always there to talk.

I can help them find some of the best doctors who understand this condition and will help them make educated decisions.

I will tell them that they were chosen to be this child’s parents because no one else could do this job better than them.

It’s the vision of hope we all need in that hour of desperation.

As a sweet surprise, I was chosen as this years 2015 Visionary Award recipient for the CARES Foundation. I volunteer for organizations that I am passionate about their mission and what they do for others. This organization helps thousands of people and families find hope when they have lost their way. It can be an scary time to be alone. I’m just one person trying to connect with others who might need a friend. I’m not a doctor. I’m not a fortune teller. I’m a friend who has been there.

So here is what I’m asking of you…and I never ask for help unless I really need it, so please listen…

I hope that I have helped you in some way, shape or form that you would be so kind and able to help donate to my cause, The CARES Foundation. Any amount will help. The work they so providing support to people, kids and families could not be possible without your donations. The annual Gala that is being held to raise awareness is taking place in Orlando on May 8th, at the Orlando World Center Marriott. Tickets are being sold for the Gala here and I would love to fill the room with everyone who has made a difference in my life and in turn, thank you for helping others that have been helped, like our family has been.

CLICK HERE TO SUPPORT THE CARES FOUNDATION.

I have also appointed Courtney Horner as my “Team Captain” as her support over the years has been amazing. I hope everyone has a friend like her in their life.

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I have a birthday in one week and this would be the greatest gift from all of you. To give in the honor of my kids… My beautiful babies that didn’t ask to be born with this condition. And for all the people and families out there that live with CAH and need help. They CARES Foundation says, “everyone cares. ” I CARE Jake, Shelby and Abby (& Mia of course!). Who do you CARE for?!

So call some friends, buy a table, buy a ticket or just donate to the cause! Let’s all get dressed up, and come to Orlando on Friday, May 8th for The CARES Gala and let’s celebrate the hope we can give to others that have also been touched by this condition.

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xoxo~

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The Langfords

P.S. My husband gets to introduce me on stage, so that should be more than enough reason to buy a ticket! See you May 8th

29 Jul 2015

Five Reasons I Love Being Around Three-Year-Olds

No Comments Adventures, CAH, Lifestyle, Parenting, Raising Children, Today Parents Blog Posts

This post was first published on the TODAY Parenting Team Community Blog.

“You must have more patience than I do!”

“I don’t know how you do it.”

“You must have your hands full.”
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16 Apr 2015

A Vision of Hope: The CARES Foundation Gala

No Comments Adventures, CAH, Personal, Raising Children

I’m actually living my dream. Right now. I’m in a state of euphoria that seems somewhat surreal because all my wishes came true and are happening before my eyes. The ones I prayed and prayed and prayed for that I wished so hard on every star and promised God the world if he would make them come true.

IMG_7052.JPG

I get to see my son play baseball. I get to watch my daughters in a recital. My children excel in school. They are kind. They are happy. They aren’t sick. I get to put my children to bed each night in their own bed. They are healthy happy and living a normal life. THIS is the life I dreamed of that I wasn’t sure would be a reality.
Read more

01 Mar 2015

Celebrate Life & Do Something: Life with a Rare Condition

1 Comment CAH, Everyday, Kids, Parenting, Raising Children, Uncategorized

“The world is a dangerous place; not because of those who do evil, but because of those who look on and do nothing.”

Albert Einstein

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Today is February 28. Only month in a year that we have 28 days, sometimes 29. Crazy, I know. But do you know why we have a leap year?

A common year has 365 days and a leap year 366 days, with the extra, or intercalary, day designated as February 29. A leap year occurs every four years to help synchronize the calendar year with the solar year, or the length of time it takes the earth to complete its orbit about the sun, which is about 365¼ days.

Without the extra 5 hours, 48 minutes, and 46 seconds that is needed to make the cycle complete, time would be off. Everything would be out of sync. The stars wouldn’t align and the seasons, eventually would be off. It just wouldn’t be “right.” It’s a rare day that February 29th, but we all accept it and celebrate the extra day we get every 4 years.

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Shouldn’t everyday on Earth be a celebration? We’re alive, right? That’s exactly how I feel about my kids. They are mine to celebrate and mine to protect. Unique in their own ways, but exactly who they are because of what makes them…them. And without them, for me, and many people who love them, the world wouldn’t be what it is without them either. We celebrate life, the normal and realize life is precious everyday.

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11 Feb 2015

The Story of Go Abby Go

No Comments Adventures, CAH, Everyday, Tampa, Tampa Bay

On Your Mark…Get Set…Go!

Abby is off to her very first race this Saturday. It’s a big race…30 yards. But that 30 yards has taken us 30 months to prepare for.

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24 Sep 2014

Blindsided

No Comments CAH, Everyday, Personal, Wordless Wednesday

The definition of the word ‘blindsided’ is to catch (someone) unprepared.

Ummm … that word ‘unprepared’ is not in my vocabulary if you know me, yet that’s how this life with CAH works.

This was yesterday. Y E S T E R D A Y.

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18 Jun 2014

We Are The Lucky Ones

2 Comments CAH, Kids, Parenting, Raising Children

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“Mommy, I will eat all my green beans tonight!”

“Really?! Wow! Shelby, you are such a big girl!”

“I know! That way I can stay healthy and won’t have to get any more blood draws, right!? Because if I eat my green beans, I will be healthy and I won’t need to go to all the doctors any more because you only go to doctors when you are sick, and I’m not sick! I am healthy.”
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28 Apr 2014

A Year Later: Keeping Promises

No Comments Adventures, CAH, Everyday, Personal

One year ago seems like yesterday. I can recount every minute, every instance. Every person who helped. Every person who prayed. It seems so much like yesterday. And still brings tears thinking about how differently things could have turned out.
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18 Mar 2014

The BEST Big Brother EVER!

2 Comments CAH, Kids, Lifestyle, Parenting, Personal, Raising Children

An article I read the other day got me thinking about a gift I never knew existed from my son, the big brother of three younger sisters. It was a gift I had never thought about until I read the article.  I wanted to write this piece so that one day my girls will know that Jake, their big brother, gave them a gift I could never have given. Read more

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